National MP Michael Woodhouse has talked about the "pain" of living with bowel disease at a tearful march to Parliament where advocates called on Pharmac to fund medication.
Crohn's and Colitis NZ, a charitable trust established in 2010 to respond to the needs of patients across the country, led a march on Wednesday to present a petition of more than 30,000 signatures to Parliament and Pharmac's headquarters.
The petition calls on the Government's drug-buying agency to fund ustekinumab, a medication to help New Zealanders suffering with severe Crohn's and Colitis - diseases that cause inflammation in the digestive tract.
Crohn's disease can cause abdominal pain, diarrhoea, weight loss, anaemia and fatigue. Some people may be symptom-free most of their lives, while others can have severe chronic symptoms that never go away.
ACT leader David Seymour, who initiated the cross-party calls for a Government review of Pharmac in the lead-up to the election, received the petition at Parliament and welcomed Woodhouse to speak.
"I have Crohn's disease," Woodhouse told the rally. "I was diagnosed several years ago and I'm not the only Member of Parliament who has an inflammatory bowel disease."
Woodhouse revealed he has other serious medical conditions which led him to be prescribed a TNF inhibitor, a pharmaceutical drug that suppresses the response to inflammatory diseases.
Woodhouse said it has been effective in controlling the symptoms of Crohn's disease but he's all too familiar with the pain the disease can cause.
"I, like you, know what it's like to go out to a function and the first thing you do is find where the nearest toilet is, to sit for four hours in a select committee room and have your colleagues wonder why you keep leaving every quarter of an hour, and the pain," he said.
"I'm particularly moved by those who have had surgery and a lot of you are holding signs saying prevent more surgeries.
If there's one thing that's wrong with Pharmac, in my view it's that it doesn't consider the broader costs and benefits of some of these drugs and there is a massive opportunity I think if this drug is successful to reduce the number of avoidable surgeries and long-term suffering."
He told the crowd: "Hang in there. I hear you."
Eden Leigh Standing, 26, has Colitis and was overwhelmed by the support from MPs.
"Thank you for supporting us - it means a lot," she tearfully told Seymour as she hugged him.
Standing was diagnosed in June 2010 when she was 15 years old.
"I lost a lot of time at school, I lost a lot of friends; they didn't understand why I was away and why I couldn't go out with them a lot. For 10 years I've dealt with multiple hospital admissions," she told Newshub.
"Lots of pain, incredible pain, and a lot of loneliness - it's a very lonely disease," she said. "We've finally managed to get awareness to a point now where I'm proud to stand here and look like this. I'm proud of this and everything we've achieved."
Standing had surgery due to severe Colitis.
"My bowel was chronic so it was dead already. I was left with a bag which sits on my abdomen and I live with this now. This is my second bag that I've had," she said, pointing to the white package on her waist.
"This is life. This is important because it saved my life - surgery saved my life but medication could've prevented it," she said.
"I'm proud to have it because it shows that my body is strong but the medication itself would've delayed my surgery and kept me healthy for longer."
Pharmac chief executive Sarah Fitt and Pharmac board chair Steve Maharey met the marchers as they stood outside their offices and spoke with them.
"We understand and appreciate that inflammatory bowel disease can have a significant and ongoing impact on those who have it and their whānau," said Fitt.
She said they have heard from clinical advisors, and through regular engagement with people who treat and manage people with inflammatory bowel disease, about the need for further treatment options.
"While we can't give a timeframe for a decision to be made, these medicines are on the list of possible medicines to be funded," she said, adding that Pharmac is reliant on budget availability.
"We know funded access to effective medicines is important to everyone - it's important to us too because we strive to get the best health outcomes."
The Government announced in May an increase of $160 million over four years for Pharmac in Budget 2020, bringing its budget to more than $1 billion for 2020/2021.
Seymour says Pharmac's funding model is broken.
"I welcome Jacinda Ardern's promise to follow through on the commitment she made on the campaign trail to review Pharmac. But this isn't an issue she can just pay lip service to," he said.
"ACT agrees with the chair of Crohn's and Colitis NZ that it is outrageous that suffering New Zealanders have to go to such lengths to get access to medications that are standard treatments funded throughout the Western world.
"The least the Government can do is agree to reviewing the 30-year-old Pharmac law and funding model."
